Chapter Eleven-Alzheimers Story Tuesday, Nov 17 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 3:43 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Eleven

One thing I have always been surprised at is how many people, including medical professionals, do not understand Alzheimer’s or how it impacts the sufferer or their families. (Just for the record, speaking louder doesn’t help the patient understand.)  It seems the general impression is that Alzheimer’s causes a person to lose their memory and that’s it.  The memory loss is defined as forgetting the names of things or people. While memory loss of this nature is a huge part of the picture, in reality, this disease is much meaner.  Over the years in dealing with Belle and the impact of her illness, I have come to describe the loss of memory and loss of abilities in a plain terms illustration.  I actually told Belle my theory once while she was still in her early stages and she agreed that it was very close to accurate for how her abilities were impacted. 

Picture a block of Swiss cheese sitting on a surface.  Now picture dropping little droplets of liquid onto the cheese from above.  Sometimes the liquid runs one way or the other; sometimes it drops through to a lower level through the holes.  Sometimes it pools in an unexpected place.  In this illustration, the abilities and memories of the person are the liquid and the cheese is the brain.  Sometimes the liquid drops on the top of the cheese and runs completely through it which means the person functions fine completely through the task or remembers an event correctly.  Sometimes the liquid misses the first level of the cheese and hits a lower level which means they cannot recall an important item or they may know step one and three of a task, but step two has been forgotten. Sometimes the liquid drops straight through the cheese without touching anything which means they’ve lost ability they once maintained or they recall the event but recall it incorrectly.  And all these drops happen on the same day, meaning that their abilities are at different levels at the same time.  The following day, the experiment is performed again and the liquid runs differently.  So on that next day, the abilities are different as well.  On that day, step 2 of the task forgotten previously is back or step one has joined it or is forgotten. 

As the disease progresses,   functionality and memory fluctuate. An Alzheimer’s patient may be able to perform a task one day and not the next, but regain the ability the day after that, at least temporarily.  Before my experience with Belle, I believed that once ability was lost, it was gone.  In later stages, that turned out to be true, but throughout the beginning and middle stages of this disease’s progression, I’ve determined that not to be the case.    Unfortunately, this fluctuation of memory and ability adds to the level of denial that exists in the patient and the caregivers.  I can recall numerous times discussing something Belle had forgotten one day and recalled the next, and using that as a sign that things were not getting worse or that the changes we were witnessing were temporary.  She was just having a bad day.

Although an Alzheimer’s patient may become child like in their reasoning or abilities or behave like a child, they are not a child.  A child’s normal progress is upward, improving, learning.  Once a child knows how to do a task or recall a fact, they normally retain it and build on it.  When an Alzheimer’s patient declines, their abilities reduce, but the descent is not even or fluid.  It is bumpy and uneven.  Additionally, the patient for us was Scott’s mother, a person of authority in his life.  Balancing the reduced abilities of the Alzheimer’s patient with the status of that person in one’s life is often difficult and frustrating.  The Alzheimer’s patient seldom understands how reduced their abilities have become and the caregiver must balance the physical needs of the patient against the emotional needs of the patient.  I believe the majority of the discord that occurs between a patient and a caregiver stems from this issue.  The patient doesn’t believe they need help or have significantly reduced abilities and may be insulted and/or angry that someone, anyone, much less their child, thinks there is a problem. The caregiver, oftentimes a child of the patient, tries to balance the physical needs and the feelings of the patient without, hopefully, insulting the patient.  The parent becomes the child and child becomes the parent as the disease invades their lives. The authority levels alter, but the patient rarely understands this change.  We were actually very lucky with Belle, as she, even with her abilities waning, generally maintained a good humor and spirit and was rarely angry at us or belligerent, with a few exceptions.

 

Chapter Ten-Alzheimers Story Saturday, Nov 14 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 4:06 am

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Ten

All the things that were going wrong combined with all the issues that were coming up had pointed to this diagnosis, but hearing it confirmed was hard.  I felt hopeless, embarrassed and angry.  We were already expending so much energy to protect and help her.  The words that were now coming out of the doctors’ mouth meant it would be getting worse and we would, because of her disability, be forced deal with and provide an increasing amount of daily assistance for her.  I spent time on the internet reading and rereading Alzheimer’s information and family stories.  I researched support groups.  I worried.

Over the years of our marriage Scott’s relationship with his mother had been a source of discord between us.  I felt that he always placed her first, that her wants and needs, real or imagined, always came first regardless if this placement was needed or warranted.  Scott felt obligated.  He had a duty as her son; she was his Mother.  He wouldn’t be here but for her.  During times of discord over this topic when we were younger, I’d point out her other children did not feel this same obligation or react in this manner.  Why did it have to be him always riding to the rescue?

And now that we were older and supposedly past the issue of his relationship with his mother and its impact on us as a couple and family, her diagnosis placed us back into the same old space of discord over her. Scott felt obligated to anticipate her wants and needs, to take care of her regardless of the impact. I felt trapped in an escalating situation with no end in sight. Our kids were old enough now that we could have some freedom, and finally, we could do a few things if we wanted.  Instead, at Scott’s insistence, we were accepting this huge obligation with little or no help from his siblings.  The time frame following her confirmation of illness was not a good time for us.

Two of Scott’s siblings lived close enough to help on a daily basis and two did not. The issue then became, did they want to help and would they help?  And if they wanted to help, would Scott want them too? Scott had the ‘power’ by way of the power of attorney and his relationship with his mother to handle and dictate all that needed to be handled.  How much help would he want or allow? And what would the impact of his need to control every aspect of his mothers care do to us and our lives?

What would and could his siblings help with and how could he control it?  I was automatically involved strictly because I am his wife and although I was allowed an opinion, he was the decision maker, in control of her finances and person.  He treated his siblings in much the same manner as he treated me.  They were allowed an opinion, but the final decision was his alone.  His feelings of reasonability for Belle, which had always been in overdrive, skyrocketed after the diagnosis.  He needed to do more for her and we would just have to make whatever sacrifice was needed.  Although, in my mind there was never any doubt Scott would be the primary person responsible for her physical and financial well being, the fact that our family, as well as us as a couple, would be further impacted by her diagnosis came home with a renewed force.

As time passed, we argued about what was required of us immediately, we argued about what would be required of us in the future and argued about if we could make it through this ordeal.  I pressed, wanting the siblings to do more, be responsible and shoulder some of the burden.  Scott needed to be involved in every detail and control the actions of others, partially to reduce his stress level.   We argued about his siblings and how they felt they fit into the situation. And of course, the siblings, whether close or far, wanted input regarding Belle’s situation (financial and personal), without any of the immediate responsibility. It did not matter that we were saddled with the weekly, hourly and minute by minute care of her, they had opinions and wanted input regardless of their location or involvement.  Over the next few years, the stress and discord between Scott and his siblings would peak, ebb and flow, as decisions were made on Belle’s behalf and old rivalries between the siblings were resurrected.  There were also periods of arrangements and agreements, bonding and support between the siblings as the stress of Belle’s situation impacted each of her children and their families.

Belle had stated many times in my presence before her illness and after her diagnosis that she did not want to burden any of her children with her incapacity.  Growing up, she was impacted when invalid relatives lived with her family. One time in particular, I recall her stating the bedroom she and her sisters shared was given to the ill adult that came to stay and that this adult was overbearing and unpleasant.  She had thought this was unfair. She had also experienced the other side of caring for the elderly, as she had taken care of her mother later in life. Mae had maintained her mental abilities but had long term physical issues and had lived with Jim and Belle for several years before her passing.  Although Mae had been easy to care for, the responsibility of having another person under one’s care, in one’s home, especially a parent, created stress for Belle, who had told me that caring for Mae had placed additional stresses on Belle’s relationship with Jim.

Now, Belle felt she was functioning ‘enough’ on her own and thought by living on her own, she was saving us the same burden she had experienced at various times in her life.  She felt she was trying to be mindful of the personal space that couples needed, although based on my relationship with her throughout the years, I often found this sentiment amusing.  I felt she had had very little regard for the space a young couple needed back when Scott and I first married which had been one of our biggest areas of contention through the years.   But, at this point, although her intentions were good, she had no comprehension of how much time and effort was already being expended on her behalf or how burdened we sometimes felt.  She wasn’t aware of and did not understand the invisible and not so invisible support we provided to keep her living on her own.

I voiced my feelings and frustrations outwardly more often than Scott did, but we both felt pressure and obligation to care for her.  In addition to all the methods being used to keep her living on her own, we rarely went anywhere that she was not with us.  We spent many evenings with her at her home, watching TV or attempting to complete small projects. Although Scott’s family and mine rarely mixed, with the exception of our sons’ birthday parties during their younger years, Belle began attending my family gatherings with us.   We strived to create interaction with her for simulation.  We also strived to minimize the time she spent alone.  Of course, we could not and did not display any of our stressed or obligated feelings regarding the time and effort we were expending for her care and safety to her.  She had not gotten ill on purpose.  We were just trying to live our lives, raise our children, take care of her special needs, be mindful of her feelings and still have time for each other.

 

Chapter Nine-Alzheimers Story Friday, Nov 13 2009 

Alzheimers Story and Elder Issues , , , , kwlaff 6:41 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Nine

During 1996, after two years of memory and ability issues and an obvious decrease in Belle’s overall functionality, which forced us to create methods to monitor her and assist her, we decided that the doctor that Belle had been seeing for years did not want to believe she could really have a problem.    Even with repeated office visits and her inability to follow time and answer questions posed of her, no additional tests were ordered or conducted.  We no longer believed the behavior we were witnessing was normal aging. Scott decided to seek a second opinion and we discussed the potential change in doctors with Belle.  She was aware something was ‘wrong’ and was willing to visit with another doctor if Scott thought another doctor would be able to help her.   So Scott set up and accompanied her to the appointment.

Based on Belle’s abilities, the doctor recommended several tests, physical and mental.  It was obvious she had reduced abilities and it was important to rule out a physical reason.  Over the next few weeks, the requested tests were performed. When all the results came in, the answer was consistent with what we had begun to fear.  There was not a physical reason for her loss of memory and function.  It was not normal aging.   It was dementia of an Alzheimer’s nature. 

With a diagnosis in hand, we now needed help with retaining and maximizing her abilities. We located a doctor that specialized in geriatric issues that was located not to far from our home and made an appointment for Belle.   Scott and I accompanied her to the appointment.

I know this may sound outrageous, especially after listing all the problems we had witnessed with Belle’s memory and function, but this appointment really opened my eyes regarding how far down the path of ability decline and memory loss Belle had traveled.  As one can ascertain by all the previous chapters, we knew something was wrong and we had created systems to protect and assist Belle in every way that seemed to be required.  But sitting with Belle in the doctor’s office that day, for moral support from my point of view, listening to the simple questions asked of Belle and watching her struggle with answers to questions that were specific to her life and family history, I was surprised and dismayed. 

As the doctor and nurse began to ask questions about Belle’s life and medical history, the problem became the elephant in the room that no one wants to mention.  It was very clear that she could not recall information she had always known.  How many children do you have?  Four she said and then glanced at me for confirmation.  Five, I whispered while holding up my hand to display the number five.   How old are you?  She couldn’t recall and guessed a few years younger than she was.  Personal medical history, family medical history of heart problems, memory problems, etc.   No problems that she knew about, followed by a glance at me with a beseeching look.   Both her parents had medical problems that she was well aware of and certainly had known in the past.  As the doctor completed the standard questioning in a calm and reassuring manner, we stayed in the room with her as she incorrectly answered or did not offer an answer for each question posed.  Sometimes she offered a nervous laugh as a response versus a verbal reply. We provided the answers to the questions she could not provide and corrected information when her answer was impartial or not correct.   I felt defensive during this process, feeling the need to protect Belle from the doctor and his questions.  It became difficult as the questions progressed to allow her to attempt to answer at all.  We began to answer for her to save her the strain.  It was one issue for her to be confused in private with people who cared for her and could protect her, but quite another for her to be confused and unable to answer questions in this, more public and unprotected, manner.   It was a personal reaction to Belle’s plight I had not expected of myself. 

Over the next few weeks, Belle worked with professionals for memory and task testing and had numerous other diagnostic tests completed. The doctor recommended she be placed on a memory medication commonly used for Alzheimer’s patients and that we were told might help to stabilize her abilities. We agreed.  For us, the diagnosis and subsequent report of her abilities was confirmation of the worse possible outcome.  We thought we had a good idea what the diagnosis meant.  We were naïve and although we did not know it at the time, unprepared.

 

Chapter Eight-Alzheimers Story Friday, Nov 13 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 6:17 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Eight

Memory loss or confusion was not Belle’s only symptom.  Other issues began to erupt and it was difficult to handle them without being overbearing or accusatory.  In addition to our phone calls and frequent visits, Deacon spent more and more time at Granny’s house, partly to help her, in theory, with her projects and paper sorting, and partly to report to us what was really happening during the day.  He become a mini adult and often assisted Belle with minor decisions and reasoning.

What was reported was that Belle was not eating or when she did eat, it was sweet items, mainly cookies and ice cream. With this news, Scott’s morning check in calls began to include reminders to eat including suggestions regarding what to eat.  Afternoon calls or evening visits included questions regarding what she had eaten.  We began checking on the contents of her pantry or refrigerator in an attempt to verify her meal intake.   She always had a ready answer for what she had eaten, even if it turned out not to be true.  We started bringing meals over and eating with Belle more often or having her join us more often for restaurant meals so we could ensure she was eating.  Sweets on hand continued disappear first.

Although Belle had never had a weight problem, she, like most women, felt like she did.  Jim was not a man who wanted an overweight wife and part of her self improvement routine throughout the years was to prevent being overweight.  She closely monitored her weight and it was not uncommon for her to eat light, small meals.  A standard breakfast might be grapefruit juice and toast.  However, now her eating patterns, which had been standard in her life for years, were changing or being forgotten but the underlying concern, strangely enough, over her weight remained intact. She began to display some weight gain as she now preferred meals of ice cream and cookies, even as she lamented over putting on weight.   Deacon, during his lengthy stays with her, was used as an excuse for more frequent fast food runs, including hamburger and shakes, one of her most nostalgic meals, with Granny telling Deacon there was no need for him to tell his Dad.  She was eating sweets in much larger quantities than ever before and still weight conscious.  It was not uncommon for her, when eating a meal with us, to skimp on her calorie intake, while mentioning her concern over her weight.

 

Chapter Seven-Alzheimers Story Friday, Nov 13 2009 

Alzheimers Story and Elder Issues , , , , kwlaff 6:07 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Seven

Belle began to attempt to cover up her memory and function issues.  While we knew she was experiencing more and more difficulty, causing good days and bad days, we did not know if she knew she was having problems.   We looked for indicators in her actions and speech that might reflect the level of her abilities.  We spoke with Belle frequently regarding how she was feeling and thinking.

Belle’s statements of ‘crazy’, as mentioned earlier, became a standard routine and we had come to feel it was an excuse she used more often than she needed to or should.  Once the term crazy was extended to explain an action or event, no further explanation seemed to be required from her point of view, even though we often sought more information. We thought her use of this phrase was a confidence issue, not an ability issue although as her abilities decreased her confidence in herself decreased as well.   In some areas of function, she began to be very timid.

We noticed that in addition to the crazy excuse often extended, she was also saying things that were obviously not true.  It was not difficult to catch her telling untruths. The incorrect items were small and not necessarily important but based on the issue they related to, there was not really a reason to not tell the truth. We joked to each other that the truth would have been easier to relate than the yarn or tale we received.  When we discovered the first ‘stories’, we thought Belle’s making things up or lying was deliberate.  Why she would lie, we had no idea. Over time we concurred that an obvious, blatant untruth meant we needed to look into the matter further.   We began to understand that this activity was not deliberate, but a result of Belle’s faulty memory and/or reduced abilities.  Most of the time, it seemed she believed what she was saying was true, or at least not an outright lie.  We were careful not to be confrontational or demanding when we discovered an untruth, as there was no reason to be harsh and cause her to be embarrassed or, worse yet, more confused.  Often we felt she was stating something that she felt we wanted to hear, as she knew good from bad, in much the same way a child might understand good from bad.  We believe she did this for self-protection or in some instances created stories due to confusion.  She wanted to be able to answer our questions or fit in when others were around.  She wanted to reason things through on her own.  She desperately wanted to understand. 

Another signal of a bad day was the phrase was ‘my eyes are tired’.  Initially, when we began to hear this phrase, we thought she might have some sort of eye strain or other sight issue.   So Scott made arrangements and accompanied her on a visit to her ophthalmologist.  Her inability to respond to the testing was obvious, but other than the normal issues with her eyes, sight correction and cataracts, her eyes were fine.   It was then obvious that the statement, which she used often, was not truly about her eyes.  We began to monitor when ‘tired eyes’ became part of her conversation and compared notes with others that had frequent contact with Belle.  It soon became apparent that she resorted to commenting about her eyes being tired when she was confused or unable to recall the information she wanted to provide.   Based on her actions, our conversations and the situations that arose, it was my impression she was trying so hard to comprehend and recall that she tired herself out. So the only way she could relate this information to us was to describe how the result felt.  I liken it to thinking so hard on a topic that one gives themselves a headache. 

Whenever anyone spoke with Belle on the phone or in person, and asked what she had accomplished or done that day, the standard response was ‘sorting papers’.  I sorted through papers today, or I kept busy sorting my papers.   She was always making headway on the mounds of paper and other miscellaneous items that 50 years of marriage and 70 years of life generate.  After a time, when we saw no evidence of any papers ‘being sorted’, leaving the house or any other headway being made,  we would press a bit harder with our  questions.  What kinds of papers were you sorting?  Did you throw any papers away?  Her answers remained generic.  MY papers, she would insist and after a while we began to realize that no ‘sorting’  was occurring, much less sorting for the purpose of disposal.  This type of non specific answer became common place for any question asked, and although hard to pin point when she had actually completed or at least started a task, we understood she was answering to the best of her ability.    

Other indicators of waning abilities were more visible. When mail would be delivered, she would go through it and write notes to herself so she could remember the item or know how to handle it the next time she saw it.  When Scott received a call from her insurance agent stating a premium had not been paid, we sorted through stacks of bills, solicitations and junk mail with notes to herself written on them.  Belle, ask Scott about this.  KEEP!  VERY IMPORTANT! Belle, you need to pay this one where typical of the notes we found.  Belle could no longer distinguish the difference between important items and solicitations or junk.  ‘Important’ or ‘ask Scott’ might be written on obvious junk mail addressed to current resident or occupant as well as a notice for her insurance premium or electric bill.  She had also mistaken solicitations from political candidates or the Republication party as bills that were due and sent them a check.  Further review revealed some bills were missing completely.  Scott contacted all her billing parties, verified the status of each bill, and had the important items changed to be mailed to our address. From this time on, Susan or Scott assisted with her mail and bill payment with Scott eventually taking over the whole process.     

Belle began to forget that Jim, her mother or other deceased loved ones were gone.  This circumstance normally occurred on a bad day when she had been upset by something else.  She might place a call to Scott and ask him if Jim had called.  Or if we dropped by after work, she would demand to know if we’d heard from Jim.  Each time an episode of this nature occurred, if Jim was the object of her concern, she would be obviously mad at Jim for not calling and for being out of reach.  (That’s one long distance call!) On the best of the bad days, reminding her he was gone snapped her back into the present.  On the worst of the bad days, the fact of his passing was not retained.  From my observation, and I’ve told Scott this many times, she did not ask about him in any tone other than anger.  Forgetting he was gone did not seem to occur when she was happy or sad. For whatever reason, Jim was associated with anger and, by the sound of her voice, obvious distrust.  On occasions when Belle forgot a loved one, such as her mother, was gone, the realization they were gone always hit her hard and she would react as if the news was fresh and recent even if their passing had been years before Belle became ill.

In our attempt to understand her confusion and forgetfulness, we often used logic.    Neither Jim or Belle’s mother had ever lived at the current home, so how could Belle become so disoriented that she believed them there?  Why did she know they were gone sometimes and not others?  Why was she always mad at Jim?  (We thought we knew that answer.) As time passed, we determined that logic did not impact her mental/memory situation.  What was lost one day might be back the next.  What was forgotten might come and go.  What made sense or was logical to us, was not to her.  I went through a phase of attempting to delve into how her mind was working, thinking that if I could understand the how, the why would follow.  I wanted to know how she arrived at some of her decisions or the thoughts she expressed.  If we just knew that, we could better understand her and help her or maybe even prevent the problem.  Scott was the first to express to me that applying logic did not help and that while it was admirable I wanted to understand how her mind worked, it was just not possible to understand the brain when it is not functioning properly.  I, over time, came to agree with him although I still approached my attempts to understand Belle and her activity from a logical standpoint.

 

Chapter Six-Alzheimers Story Friday, Nov 13 2009 

Alzheimers Story and Elder Issues , , , , kwlaff 5:55 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Six

As the months passed, the issue that seemed to give Belle the most difficulty was time. She was losing the ability to keep track of the time of day, the day of the week, or appointments she had set. Since we had been assured this was normal aging and we had no need to worry about increasing difficulties, we developed creative ways to assist her with keeping track of time so she would not miss an appointment or deadline. A special wall clock was purchased with a date and day display. This type of display was common in a watch, but not in a wall clock, and in the days before the internet, hard to locate. We posted calendars with notes regarding appointments, deadlines and debt due dates. Scott’s calendar mirrored hers, so if an appointment was set for her, he could call and remind her of it an hour or two before she needed to leave. Soon after Jim’s passing, Belle had asked Scott to be her Power of Attorney, and he used this document to add his name as a contact for her accounts with the electric company, the telephone company, the insurance company and any other regular debts with scheduled payments. Belle was paying her own bills, for the most part, and Scott was, from time to time, checking to verify payment.

For unknown reasons, Belle’s worry of forgetting to pay an amount due seemed to focus on her safe deposit box. Her box was located at a branch of my employer, so I assured her I could monitor it for her. On numerous occasions, she voiced concern that she would forget to pay the rent and her valuables stored inside would be lost. Although we assured her Scott and I would no allow this to happen, on more than one occasion Belle called me at work, to request I verify she had paid her box rent and I would assure her that all was fine. Belle’s checking account also resided at my place of employment. On several occasions, she voiced concern that she might be able to be talked out of money and this was something she knew she could not afford. So I assured her I would keep on eye on her account and the box rent and I did. I could monitor the account balance and report to her anything I thought looked amiss. I received approval to place a comment on her account which told the front line staff to call me if anyone came in person to conduct a transaction on her account or attempt to access her safe deposit box. At least once a month, Belle would bring up her concern, seemingly as a new concern, and I would reassure her I was on top of it. She said this made her feel safe that I could ‘look out for her’.

As the year passed, we tried additional time tricks. Belle began a medication regime that needed a morning and evening dose. We purchased an alarm clock/radio with more than one alarm time setting and set the alarms to go off once in mid morning and once in mid evening. I wrote out instructions that included why the alarm was going off, how to turn the alarm off and that the alarm meant she needed to take her medications and attached them to the top of the alarm clock. By this point in time, we were already dividing up her medication for her during our regular Sunday evening visit into a case with days of the week stamped on it. In addition to the alarm clock reminder, Scott began calling her every morning around 9 a.m. This call accomplished several things. In addition to verifying she was okay, he would remind her to take her various medications, and if any appointments were scheduled for that day, he reminded her of them. These creative solutions, for the most part worked. Belle continued to live on her own, with some invisible and not so invisible assistance.

Despite all our efforts, Belle’s inability to track time would get past us and create an embarrassing but harmless situation. While no harm was done, she would often be upset by the circumstance. On more than one occasion she appeared at the beauty shop for a hair appointment hours early. On at least two occasions, she was more than a day early for her appointment. Since we shared a hairdresser, Louise would call and let me know of Belle’s arrival. Depending on how upset Belle appeared, Louise would put Belle on the phone so I could assure her, even though Louise had reassured her already, that the appointment wasn’t until the next day or next week and that being early was better than being late. Once calmed down, Belle would say she was just crazy, laugh and head back home. I am sure she had this type of issue occur more than we knew about and that we only found out about some of the instances.

Every year on the third Sunday in May, Jim’s family had a family reunion in East Texas. Attendance at these reunions was highly encouraged and family from all around the country made a special effort to attend. Since Jim’s passing, Belle had traveled with us to the reunion. In May of 1996, Larry planned to attend the reunion but Emma had other obligations and would not be able to attend with him. So Larry planned to fly to out, stay with Belle for a day or two and drive with her to the reunion. Scott, the boys and I would drive over on our own later on. Larry and Scott coordinated Larry’s arrival and Scott assisted Belle with placement of the appropriate reminder note on the calendar, as Larry would be arriving during the work day and Belle would be picking him up at the airport.

On the second Tuesday of May, Scott called Belle as was his habit around 9 a.m. The conversation was normal, with the standard medication intake and other reminders, until Scott asked her what she had planned for the day. This was a standard question that normally received the standard generic answer along the lines of ‘sorting papers’, etc. This time however, Belle stated she was picking Larry up at the airport. Scott told her Larry wasn’t due to arrive until the following week, but Belle was insistent that it was that day and she was ready to go. Scott checked his calendar to ensure he had it correct and then once again told her it was the following week. He asked her which phone she was using and she let him know it was the kitchen phone. Her appointment calendar was posted in another connected room, which could not be reached with the kitchen phone cord. He told her the date, asked her to put down the phone and go look at her calendar. He stated the date again, and told her if she looked at the calendar she would see that next Tuesday’s date was when Larry needed to be picked up at the airport.

When Scott told me about this event, he stated he heard the phone be placed lightly on the counter with a slight click. Through the phone receiver he heard the movement of shoes across the vinyl floor, the rustling of paper, and the sound of shoes on a vinyl floor returning to the phone. As Belle picked up receiver back up, Scott heard a big sigh and then Belle said in an exasperated voice “but I already have my lipstick on.” Convinced that a trip to the airport was not part of her obligation that day, the situation resolved with Scott and Belle laughing about her being crazy and a discussion about what she would do with all her free time that day. Scott laughs now when telling this story to others and in the years that have passed since then, we use Belle’s excuse as an explanation for many things. It symbolizes how badly we want something to be right and how easy it is to get something wrong. If you’ve taken the time to put on your lipstick, you aren’t the problem.

Due to this and other similar events, we began to withhold appointment or event information from Belle until an hour or two before it was to occur. If she was aware of the event too early, she could no longer track how long until she needed to prepare for it, and would fret, believing she had missed it or would be late for it. She was always early, and would pack for a trip weeks early or dress for an appointment days early. So we would only tell her of an event an hour or two before it was to occur to prevent stress for her. She was more likely to have a bad day if she was worried or stressed.

 

Chapter Five-Alzheimers Story Sunday, Nov 8 2009 

Alzheimers Story and Elder Issues , , , , kwlaff 5:32 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Five

After our Wyoming trip, we decided, with input from other family members (Emma is in the medical professional field) that it would be appropriate if Belle visited with a medical professional regarding her memory issues and behavioral changes.  Belle had a professional relationship with the internist she and Jim had gone to for years, as had several other relatives and that was well known to the family.  We strongly suggested she go visit him and allow Scott to accompany her.  She agreed.

At the visit, the behavioral changes, including short term memory difficulties, were discussed by both Belle and Scott.  The doctor asked a few perfunctory questions of Belle to determine her memory level.  Although her ability to answer the basic questions was not perfect (some of the questions the doctor did not know if her answer was correct, like – what did you have for lunch?) and no further tests were completed, it was determined that all was fine and that the symptoms we were witnessing were normal aging and most likely stress related.  We were doubtful, but relieved.  This was normal aging and nothing to be concerned about.  A doctor with a history with Belle said so.  We had no real reason to be concerned.

Within a month of that doctor visit, Belle had received an invitation to attend a distant relative family reunion, a branch of her mother’s family she had lost touch with. Belle loved researching genealogy and this reunion would be a great way of doing that along with reconnecting with her relatives.  It was a 4 hour drive away and she wanted to attend although she was concerned (so were we) about her making this trip on her own.  With our relief fresh from the doctor’s mouth, Belle, Scott and I discussed the situation and came up with a plan.  Belle would go and Deacon would go with her.  Although only 12 years old, Deacon knew how to drive (thanks to Jim) and could, if an emergency arose, help out.  He was also a good navigator, so he could assist with a map, in case she became confused.  And lastly, Belle and Deacon would take her newly purchased mobile phone with them, a new fangled devise Belle had trouble with but that Deacon, a child of the electronic age, could use with ease.  The mobile phone would give them a method to stay in touch and was an excellent emergency measure.  Deacon agreed to go along.  We discussed with Deacon what we expected of him and he was well aware, after the Wyoming trip, of some of a Belle’s shortcomings of late.  We stressed how important it was for him to check in with us and to assist Belle “Granny” as he called her, if she became confused.  Scott had Belle’s car checked out and all plans were finalized.  We saw them off on the adventure on a Friday morning.

By Sunday afternoon, when we had not heard anything from them, we doubted our decision. Scott tried calling the mobile phone several times, with no success. He then started a calling campaign to track down the long lost relatives they had gone to visit.  Although we had a few home phone numbers gathered before the trip in case of emergency, no one was answering.  In the days before wide mobile/cell phone usage, if someone wasn’t home, they were not able to be contacted by phone and it might be difficult to track them down.  After an afternoon of calling, talking with distant relatives he had not met, Scott finally located a relative that had seen Belle and Deacon at the reunion.  All had been okay and they had headed home a few hours before.  We were awash with relief.  Later that night, the wanderers arrived home. Everything had gone well, according to Belle.  She had had a good time and felt vindicated that all our worry about her abilities was unfounded.

After leaving Belle, we debriefed Deacon, who knew from the moment they arrived that something was wrong by our concerned faces.  Scott asked why he had not called and checked in as required.  He said that they had no sooner pulled out of the driveway, when Granny told him to turn the phone off to save the battery and she had not allowed him to turn it back on at any time during the trip, as no emergency had occurred.  They had gotten lost once and Deacon had navigated them back to the correct road.  So although we thought we had impressed upon Deacon his inclusion in the trip was to be the adult with all mental abilities intact, the adult by age overruled him.  She was his Granny and in charge. Although he was, at the time, functioning at a higher ability and memory level, by age he was still the kid and followed the adult’s instructions.   Part of his debriefing including his impression of how his Granny was not as sure of herself while driving as she always had been in the past.  (This situation is a good example of the dilemma most children of Alzheimer’s patients encounter, especially during the early stages.  When the person with diminishing abilities and recall is in charge or is the authority figure, how does the caregiver exert authority?  In my experience, there is no answer to this question and it is difficult for both parties to the situation.)

 

Chapter Four-Alzheimers Story Sunday, Nov 8 2009 

Alzheimers Story and Elder Issues , , , , kwlaff 5:12 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Four

Belle’s relocation to her new home now placed her much closer to us and allowed Scott and/or I to drop by on the way home from work to check on her.  Both of us worked full time in positions of responsibility in our companies, were raising our two sons, attending high school basketball games and maintaining our home and yard along with other family activities.  Now we also began regular maintenance of Belle’s yard and home.  We also began a routine of including her more intimately in the activities of our family and ‘updating’ other family on her status.

We began to arrange things in her life to make the loss of her spouse, transition of her move and her occasional forgetfulness easier for her. We obtained a phone with large speed dial buttons and programmed in our phone numbers.  I created a phone number listing with her new phone number  and address (which she had difficulty recalling) along with all the contact numbers for family and friends, which I had laminated and posted at various locations around the house for easy review and access. Although we had regularly spent time with Belle, our level of interaction was increased.  Scott felt responsible for his mother’s well being and intended to ensure that her transition to her new home and life without Jim went smoothly.

And it seemed the transition went well. Belle continued to be active in her church, with her Sunday school class and with her women’s group.  She made friends with her new neighbors.  She spent her days ‘sorting papers’ and ‘going through things’. We were very glad she was active, and taking the time to get things in order, because there were many things that needed sorting (and disposal).  The move had been so fast that we had not had enough time to review things and clean out unneeded paperwork or belongings.    Overall, the move seemed to agree with Belle and we released a big sigh of relief.  Everything was going to be okay. We explained away any inconsistencies in her behavior at every opportunity.  It’s been a tough year, too much change, and we are over reacting, were our most common excuses.

In July 1995, 11 months after the death of Jim, Scott, our youngest son Deacon (aged 12), Belle and I vacationed together.  Larry, the second oldest brother, lived in Wyoming and he and his wife Emma traveled each year to the Snake River south of Jackson Hole, where friends and family gathered to go white water river rafting over the 4th of July week.  We decided to join the festivities and invited Belle to go with us.  Although we visited with Belle frequently and Scott had daily verbal contact with Belle, and we had traveled together on short trips back to East Texas for family reunions, we were unprepared for the frustration of traveling with her on this long distance trip.

During the drive through Texas, New Mexico, Colorado and Wyoming, the repeated reciting of long ago tales and events with different than normal details escalated.   Reminders that we had already heard the story did not prevent the repetition.  Belle developed the uncomfortable habit of reading all bill boards, license plates, road signs, street signs and bumper stickers, often with a lilt of surprise or exclamation in her voice.  She began to interrupt current conversations with comments or observations regarding conversations completed hours before.  Belle had never really been a person that rattled on for the sake of talking nor would she normally, due to her self imposed manners, interrupt conversations of others.  She practiced her ability at conversation and prided herself on being a good, polite conversationalist.  During this trip, however, she seemed to be repeating stories, reading signs out loud, interrupting others and talking in general as if these activities created some level of reassurance for her. The reading of the signs especially seemed to create a feeling of reassurance for her as she said each word or phrase with a surprise or exclamation ending.

When your child does something that is aggravating, you tell him/her to stop it or divert their attention elsewhere. If the activity continues, you might get harsher. It is not really possible to handle an aging parent in this manner and it was not possible for us to handle Belle in any type of harsh manner.  Our attempts to point out that her activities were frustrating or irritating or that quiet time would be great were forgotten almost as soon as mentioned. Our glances at each other to convey our frustrations with the situation increased (and went completed unnoticed by Belle) and we discussed in hush tones out of her earshot, what could be done.  In the end, our son retreated to his tape player with earphones for most of the time spent on the road, while we determined that,  there really wasn’t anything we could do about her behavior.  Although something was wrong, the trip was good for all of us after the last year we’d been through.  We vowed we would survive whatever levels of frustration may occur and have a good vacation.  Along with adopting the grin and bear it theme, Scott and I also developed a personal code to underline our frustration to each other and laugh without cluing in Belle or Deacon.  Scott, in one of many moments of frustration during that rip, created the code by pinching me (hard), looking at me sweetly and declaring in his best voice that I needed to feel his pain.  From that moment on, anytime the frustration grew, we took turns trying to out do the other with a first pinch and laughter would normally ensue. I am sure it saved the vacation.

Once we arrived at the camp site, a no facilities, right there next to the river type place, Belle stayed nights with Larry and Emma in their travel trailer and we stayed nights a short distance away in a small town motel.  This break from each other kept spirits high and frustrations low.  While we spent our days in rafts on the water, Belle stayed on the shore visiting with others in camp. Larry, Emma, and a few others at the camp site, noticed some of the changes in Belle’s behavior.  Although the subject was not dwelt on, questions were posed and comments made by those who did not have daily contact with her and without Belle being present, regarding the inconsistencies in her conversations, how easily she became confused and her short term memory difficulties.   Overall, as with the rest of us, the issues were contributed to the multitude of changes in Belle’s life and the rough past year.

Scott and I kept the code.

 

Chapter Three-Alzheimers Story Sunday, Nov 8 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 5:01 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Three

In addition to Scott’s closeness to his mother, our oldest son Cooper had an extremely close relationship with Jim, or “Papa” as the grandkids called him.  Since Scott’s parents had moved back into our area in 1983, the close relationships between Scott / Belle and Jim / Cooper led to many of our weekends being spent at Jim and Belle’s country home, in addition to the telephone contact during the week.   The impact of this constant interaction on our marriage is other matter that has little relation to this part of our story except as it will later relate to our involvement with Belle.  However, due to the time spent with and talking to Belle, Scott had maintained his intuitive ability to notice when things were slightly off with her.  As time passed, Scott and I advanced from glancing at each other during Belle’s story telling to discussing other unusual behavior.   And with his antennae up, Scott began to notice more little things. Nothing that was noticed was by itself a reason for advanced concern, but the combination of small items began to congeal our suspicion that something wasn’t quite right.

Belle would tell Scott about an event and regale him with details.  When the information transfer was complete, Belle would start all over again, with hardly a breath in the middle, telling, verbatim, the same sequence of events or story as if the information had not already been recited. Don’t misunderstand; we all repeat ourselves, especially if we have told more than one person and cannot recall who we’ve told and who we haven’t.  (We’ve all been there.) But under normal circumstances when it is brought to our attention that the listener is aware of the details of an event, the teller then recalls having already spoken about it, usually with a laugh included.  This was not the case with Belle.   When this happened the first time or two over the phone, Scott mentioned it to me and we wondered out loud between us what was happening.  The details of her stories were slightly different from the stories we’d heard for years, and she was repeating herself. This type of activity was not normal for her. I began to pay more attention to the conversation between Belle and Scott, providing Scott with feedback, verifying that what he thought was happening was indeed happening and that he wasn’t over reacting or making something of nothing.  When Belle began to repeat a story when speaking to Scott in person, we decided Scott should try little things to see if she knew she was repeating her stories. Belle’s reaction caused us more concern.   After the first telling and while launching into the second, Scott would give clues that he had heard the information already, which she did not seem to notice.  Or he would gently remind Belle that she had just told him the story.  When he reminded her, she would stop talking, hesitate, and glance around.  Then a look of confusion or nervousness would pass over her face.  After a beat or two, without saying anything to knowledge his reminder, she would then continue as if he had not said anything, but with an underlying nervousness in her manner that was also uncharacteristic.  The story would be repeated once or twice more with Scott listening patiently.  I used to joke with him that I wished he had that kind of patience with me.  His reply was his standard regarding Belle: “she’s my mother”.

These were also several instances when we relayed information to Belle that she would, at a later date, be absolutely certain we had not told her.  Her insistence would grow into frustration when we would explain the detailed circumstances of when she was told.  Even with this recount of the event, she could normally not recall it.  Our confidence that she had been told would cause her to doubt herself and on each occasion the situation would diffuse with her laughing and commenting that she must be crazy.  Saying she was crazy became a routine comment for any situation that made her uncomfortable.

The months after Jim’s passing where financially difficult, as money was tight until the country house was sold. Scott began to help Belle, on a limited basis, with her budgeting and bill payment.  We attributed her willingness to let Scott assist with this activity, which once again was slightly out of character, to the stress of her changing financial situation.  While reviewing past payments and check register entries, Scott was surprised to find his father’s writing in the register and upon further inspection, that he had actually been paying bills.  During the years of their marriage it had always been Belle’s responsibility to keep the checkbook register and pay the bills, with Jim carrying around a blank check or two in his wallet for use as needed, and hopefully remembering to tell her he had written a check, so she could account for the item.  But reviewing the most recent register and a few previous registers, along with the checks issued, it was obvious that Jim was handling the checkbook.  This circumstance was highly unusual and we wondered what it really meant.   Later on, with 20/20 hindsight, we decided that the changes we were noticing in Belle had been occurring prior to Jim’s death and he had been slowly beginning to cover for her.   But at the time we just asked Belle why he had been handling involved in the checkbook. Belle could not provide a reason for the shift in responsibility, although she did acknowledge it had occurred and that it was about time he took on some of her duties.

Scott and Susan spent more time with Belle then other siblings during the months preceding her move to her new home in the city.   Susan had begun to notice the repeating of information, the forgetfulness and the confusion that seemed to be involved with Belle’s activities and mentioned it to Scott in passing. However, with Belle in good spirits and some of the issues seeming so intangible, the subject dropped and slipped through the crack of daily life.  During the move, which involved all the siblings, Scott asked everyone if anything unusual had occurred, or if anyone had noticed anything out of the ordinary with Belle.  No one mentioned any concerns or anything out of the ordinary.   Life went on.

 

Chapter Two-Alzheimers Story Friday, Nov 6 2009 

Alzheimers Story and Elder Issues , , , , , kwlaff 10:05 pm

But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Two

Belle Marie was born to a lumber mill family in 1923, a premature first child named for both her grandmothers.  Her parents never had much money and supported their growing family as many families did in the early part of the 20th century, the best way they could.  Slim worked whatever job was available usually in the lumber industry and Mae was a homemaker.  Through the years, it was not uncommon for an elderly relative with an illness to stay with the family and for Mae to take care of them until they were better or until they passed.  This situation had a lasting impact on Belle which she would recall and recount in her later years. 

Belle was one of the first in her family to finish high school, although she was already married at the time.  She married Jim in January 1941 during her senior year of high school, a few months before turning 18.  Although they had lived in the same rural area of east Texas all of their lives, their families socialized in different circles and attended different churches.  Belle met Jim through his younger sister, who was a classmate of Belle’s.  Jim was two years older than Belle and was already out of school when they met and began their courtship.  Their relatively short courtship often included double dates with Belle’s younger brother Paul with whom Belle shared a close relationship.  The last two months of Jim and Belle’s courtship occurred via mail while Jim located employment in South Texas and Belle attended school at home.  Letters between the two of them during this time frame display her attachment to Jim and her hopes for their future together.

Their life together, during the over 50 years they were married, had its ups and downs and included some volatile, unsettling times.  After the premature birth and death of their first child, a daughter, their four sons (born in 1942, 1944, 1957 and 1958) and one daughter (1962), witnessed good times and bad, with the bad times including displays of their father’s temper or rumors of his infidelities.  Throughout all of her adult life, while raising her children, attending church, moving from home to home, living at the piney woods farm, and relocating to the big city, Belle strived to become a person other than the lumber mill ‘country’ girl that defined how her life had started and what, under most circumstances, her life would have been destined to remain.  She was determined to be a modern woman, a good person with a refined essence, along with being dedicated to her husband.   

As with many women of her generation that dealt with the double standard of the infidelity of a husband, Jim’s activity impacted her with a direct hit to her self confidence.  Somehow, some way, she seemed to think, at least in those early years, his inability to be faithful to her was her fault. Thus, her focus crystallized on prevention through self improvement.  She took study courses in business, art classes, taught Sunday school and Vacation Bible School and became an active participant the Women’s Republican Club, serving as its president for a time.  She studied interior design through mail order courses and magazines to assist Jim with the family business of home building.  She determined what she considered to be ‘sophisticated’ and strived to achieve this desired sophistication in her dress, manner, conversation, interior design of her home and the behavior of her children.   Appropriate behavior was stressed, as it was important to her what others thought of her and her family and to preserve the appropriate perception of her family that had become a measured part of her self confidence.     

Scott is the youngest son of the family of five siblings, with his only sister Susan being the youngest child.  Throughout his growing up years, he was extremely close to his mother and this closeness continued throughout his adult years.  Scott and his siblings grew up, for the most part, on a working farm, which entailed, as farm life always does, many outside chores.  Living in the custom built farm home in the piney woods of East Texas was ideal for the family that had started with virtually nothing and succeeded.  The family members, regardless of age, pitched in to ensure chores were completed.  Scott, it turns out, was allergic to pine trees and pollen.  As one might deduce, this type of allergy is a problem for someone living in the middle of a national pine forest.  Due to this allergy, some of his chore time changed from outside activities to indoor activity,  assisting his mother with chores, such as cooking.  He had an aptitude for this type of activity and his one on one time with his mother created a close relationship that the passing of time, even years,  did not substantially diminish.  Scott became a son that could easily read his mother’s moods, determine her wishes and anticipate her wants and desires without much conversation between them.  He became her confidant. He knew the nuances of her attitudes, speech and stories.  So, in the weeks and months that followed the death of his father, when the stories and behaviors of his mother began to change, Scott noticed, before the rest of us, that something with Belle seemed slightly amiss.

 

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